Gentamicin injections
Posted , 16 users are following.
Hi I had a gentamicin injection a few weeks ago. It made me really ill after it, having a major attack that lasted non stop for 5 days and now I'm still unsteady on my feet. My consultant wants to do another top up injection to ease this unsteadiness. He said it probably would make me ill again but not quite as bad as the 1st one.
Has anybody had this treatment with a top up and how did you feel after it.
Thanks
0 likes, 39 replies
Dean1946 jacks1968
Posted
I have not had the gentamicin injections. My doctor uses streptomycin for three consecutive days. I was pretty off balanced for little over two weeks, but not sick. Four weeks after injections my hearing improved by 17 decimals. I still have some balance problems with dizziness but I have Meniere's in both ears. Going to have second set of steroids next week. Wishing you good outcome if you have gentamicin again.
tanney jacks1968
Posted
It usually takes at least two separate injection procedures to be effective. Sorry you had such a bad experience following first injection. I think what you experienced is rather unusual. My personal experience and that of others I've talked to had no vertigo episodes following procedure. Please give it another try....you will be very glad you did when the vertigo is finally gone.
gac99896 tanney
Posted
I believe you had a gentamicin shot years ago. Was it high dose or low dose? Did you get it because of the vertigo or because of drop attacks? I’m asking because I had MD for the last 5 years ( I was diagnosed when I was 46). It was terrible at first (throwing up for 3 to 4 hours and not being able move during the attack). After the first year the attacks were less severe and I was able to feel comfortable doing the same things pre-MD. About 4 months ago, I had a DA (had to go to the ER for stiches). Since the first DA, I had two more (one sitting and one laying on the couch-thank God no injuries like the first one) . Two ENTs at a very well-known hospital in the Bay Area suggested it is time for a low dosage gentamicin shot in hopes of ridding the DA. I wanted to get your take on what to expect when I get the shot and your thoughts about DAs.
Thanks
tanney gac99896
Posted
Hi Gac. I had gentamicin injections in my left ear 40 years ago when it was a relatively new procedure in the US. At the time I was having vertigo attacks every few days. I do not think we used the term "drop attack" then so I really do not know the difference between a regular Meniere's vertigo attack and a drop attack.
The injections (a week a part) eliminated totally the vertigo coming from my left ear. In the 40 years since I had the injections I have had ZERO vertigo attacks! I did have dizzyness and unbalance for a few weeks post injections. This is normal as your remaining good ear takes a couple weeks to assume responsibility for your vestibular balance (along with eyes). It is encouraged strongly that the patient attend vestibular rehab post injections which will help you regain full balance function.
Before you consent to this surgical procedure you should try all benign protocols. Have you been on a diuretic...if so what dose? Have you modified your diet to eliminate salt, caffeine, alcohol? Have you been on Betahistine....if so what dose? If all of these have proven ineffective in controlling your vertigo then I would recommend the gentamicin injections....but talk with the doctor and learn about the possible side effects. Please let me know if you have more questions. You can send me a private message if you like.
gac99896 tanney
Posted
Hello Tanney,
I appreciate your feedback.
I have taking a diuretic for five years. I was on 2,000 mg sodium diet.I have been a low sodium diet (1,200 to 1,500 ) and no longer drink coffee or alcohol since the drop attack. (I was upright one moment and then without warning fell . It felt like the world titled to the right. I couldn't protect myself and thus hit my head on the kitchen table. I was lucky because a few minutes earlier I was outside and would have hit concrete). I had another drop attack (work conference and luckily I was sitting down so I was not injured). My vertigo attacks now are short but very intense jolts (5 to 10 seconds). I had a couple of near misses (was walking with a friend and had to reach out to grab them or I would have fallen).
Im going to a vehibular specialist and it has helped with the dizziness, but i was told it won't help with the vertigo intensity or drop attack. ). I don't drive anymore and social and work life have been very compromised. My job requires I drive and attend meetings I need to work for the medical benefits. I leaning towards the shot. I know it is a risk if God forbid it goes to the other ear, but I really don't see I have much other options. .
kenneth25448 gac99896
Posted
Hi gac99896 just reading your forum you sound like you've had it bad I'm similar but not falling to ground but was suffering every second day so I decided to go for gentamicin injection had my first one 4 weeks ago recovery iss rough very I'll dizzy and bad balance the injection brought onn vertigo that lasted quite long time I'm still inn recovery mode and got small attack today but nothing like I was getting thank god but I think I'll go for second injection as most people say second injection and they havnt looked back
gac99896 kenneth25448
Posted
I hope your recovery is going well.
I am scheduled for a low dose gentamicin shot this Tuesday ( both the neurologist and ENT doctors recommended it because of the 2 Turmarkin drop attacks I experienced.). Based on what i read on this and other forums I will take a month off from work (using vacation time), and I have scheduled the first visit to the vestibular therapist a week after the shot.
My thoughts:
1. The first drop attack was 2/4 (SB halft time). The episode left me dizzy and off balance until 2 weeks ago. If it wasnt for valium (up to 4 mg on some days) I would not been to work or carpool (was getting car sick). I did not like the Valium since it made me tired and irritable.
2. Since i have been feeling good the last two weeks (dizzyness is gone, and I can actually turn my head without turning my body to talk to someone) I am starting to think if I should not get the shot and try my luck that the Turkamin attacks will go away by itself (at least that is what John Hopkins ENT states). Very tough call...
3. I have unilateral MD. I read that there is a 30 to 40 percent chance that it could go from unilateral to bilateral. That gives me heartburn about the shot. I dont want the chance of creating a bigger problem in the future.
4. If i do get the shot, is there any advice regarding recovery that you could offer?
Thanks!
kenneth25448 gac99896
Posted
Hi gac I went for injections cause my MD just would nit stop I mean every second day I was getting bad vertigo I got first injection about 9 weeks ago felt great after injection but it took 3 days too kick inn I was very I'll and unbalanced was to be exspected first 4 weeks was dizzy light headed unbalanced started to clear after 6 weeks today it got my second injection so I'm hoping after the 3 days when it kicks inn I'm so bad started my vestibular exercises Monday gone so I'm hopeing this will help me along anything is better than them horrible vertigo attacks in outa work since May gone ENT told me long recovery I'm been positive hope it really works for you be patient that's what I'm doing I'll no more inn 3 days when gentamicin kicks inn I'll keep you posted gac
tim63896 jacks1968
Posted
Hi. Is this low dose gentamicin? I've never had injections myself instead opting for the Dr Gacek protocol of oral antivirals which works for me. Gentamicin destroys the inner ear, although as I understand it, low dose is less destructive. I know that some have found steroid injections helpful. I can't understand why ent's still opt for gentamicin. Have you tried any alternatives? Tim
tanney tim63896
Posted
Tim, gentamicin injections does not destroy the inner ear! When administered by experienced ENT who specializes in inner ear diseases such as Meniere's Disease (MD) the injection can be expected to do the following:
1. it destroys the balance nerve within the inner ear of the affected ear. It's the dysfunctional balance nerve that causes vertigo. Once it is eliminated the brain will no longer receive misinformation from the "bad" nerve, and thus vertigo will be eliminated.
2. A side effect of the procedure is possible decrease in hearing in affected ear. Not every patient has additional hearing loss from the procedure....I did not. In fact, my hearing actually got better after the procedure.
3. Because the balance nerve is destroyed in the affected ear, the patient will likely suffer some balance difficulty for a short while...possibly three or four weeks. The balance difficulty, however, will go away once the good ear's balance nerve takes over. Each ear has it own balance nerve so once the bad ear's nerve is eliminated the good ear's nerve will enable patient to have full balance again.
4. Gentamicin injection is offered once all other protocol (salt/diet restriction, diuretics, Betahistine, steroid injections, allergy management, oral viral meds) have proven unsuccessful in eliminating vertigo. It should never be the first step in MD management.
5. This procedure will most likely NOT eliminate tinnitus or ear fullness from MD. Some patients, though, reported on this forum that these symptoms have significantly decreased following the procedure.
kenneth25448 tanney
Posted
Just listened to your forum tanny so glad I read it I had gentimicin injection this month 14th May I was suffering so bad started in October 2016 then from Xmas 2017 I was so bad every second day my ENT decided to go ahead with injection it took 3 days after it too kick inn obviously it's working but side affects are horrible this is day 10 after it's kicked inn I'm very dizzy and balance off nauseated but my ENT said it would pass after up to 2-3 weeks and some physio also a top up injection maybe after few months so glad I red your story makes a lot off sence
tanney kenneth25448
Posted
kenneth25448 tanney
Posted
Will do tanny I'm thinking positive I'm walking up and down my back garden every day first 7 days Wer rough but it seems to be wasting still a little dizzy at momment bit confused weather it's my balance that has me dizzy r it's the vertigo that was brought onn after injection I'm lead to beleve it gets worse before I'm better again I'll keep you posted as to how I am up to 3 weeks and thanks again
kenneth25448 tanney
Posted
tanney kenneth25448
Posted
so very glad to hear that you are doing so well....that's wonderful, Kenneth. Going to the vestibular rehab will be great for you. It will definitely improve your balance, and lessen the light headedness and dizziness. You have a great plan and I am optimistic that you will be feeling much better at the conclusion of the rehab. Just make sure you do the exercises EVERY DAY and keep all appointments. The rehab lasts about 7-8 weeks and you will notice improvements after each week. Good luck!
kenneth25448 tanney
Posted
Will do tanney so glad I found this forum and to chat to somebody that's been there wore the t-shirt
kenneth25448 tanney
Posted
Hi tanney just an update 4 weeks today dizzyness just about gone balance still off slightly walking backlot quicker but unfortunately I woke up tosmorning was pottering around the house and I got a spell off vertigo that lasted an hour still feel off at momment but can deal with it my ENT is away at momment I'm wondering do I need a second injection as I feel this is a set back whole idea off injection is too illiminate vertigo attacks was flying up on till today has yourself r anybody else exspeiriance this thanks ken I got letter for vestibular rehabilitation not till another 4 weeks thanks ken
tanney kenneth25448
Posted
kenneth25448 tanney
Posted
Hi tanney just an update was with physio Monday gave me exercises to do was happy enough with me have a slight bounce in my vission when walking and got too see my ENT today she going ahead with top up second injection feels I need it but I'm hopeing I don't end up back to square one again like I was after first injection I asked her but said ken I don't no I'm wondering iff you r anybody else was so bad I've went trew the mill trying to get right again even tho I'm still abit off I feel like I've vertigo but no dizzyness she reckons that's cause my balance off has anybody been the same after 2nd injection as they Wer the first thanks ken
kenneth25448 tanney
Posted
Hi tanny had my second injection Monday gone and I'm a lot better than the first one no wee near as bad thank god I feel slightly off and light headed but can cope with that hopefully it passes after 3-4weeks also on me second week off vestibular physio I do it at homeso fingers crossed I start too feel much better also slight tinnitus in ear
tanney kenneth25448
Posted
wonderful news, Kenneth! I'm very happy for you that your condition post-2d injection is much better than after the first one. Please keep doing the rehab EVERY DAY. Very soon your balance nerve in your GOOD ear along with your eyes being retrained (through rehab) will make up for the loss in your bad ear and your balance function will return to normal (or very close to it). Sounds like you have a great success story. Good luck!
kenneth25448 tanney
Posted
Hi tanny I'm over 3 weeks now since 2nd injection feel much much better in myself light headedness gone and not dizzy just feel off when walking in my eyes slight bounce makeing me feel off but huge improvement I'm 4 weeks doing vestibular physio at home due to see him again 27th this month iff I can get rid this slight bounce I be flying physio told me to keep it up every day till I see him which will be 7 weeks in total I'm out walking every morning for an hour and my speed and balance is good I'm hoping after I speak to physio in hospital end this month I can get back to work just an update thanks ken
tanney kenneth25448
Posted
Also, if you think you need more than the 7 weeks of therapy be sure to request it with the therapist. They will be glad to accommodate you.
Good luck!